Joshua Griffis: an appreciation

While working at the Pulmonary Hypertension Association for more than a decade and a half, I observed that one of two things generally happens when people get a serious and incurable illness. They are either destroyed or they become heroes.

Josh was one of the heroes.

I first heard about him when he had taken on leadership of PHA’s Omaha support group. Our staffer who worked with him, Debbie Drell, told me how the group was growing and how he was reaching out to the larger support group network to learn and to help.

Shortly after that Josh’s name came up again. PHA was having a hard time engaging young patients. Josh and several other became part of an advisory – and later leadership – group that defined Generation Hope. PHA’s program for patients in their 20’s and 30’s quickly became wildly successful. The model he helped develop was later used to build seven more special (hard to reach) population groups within our community.

When one of Debbie’s staff left, Josh applied. We knew hiring him would not be easy. Besides his pulmonary hypertension, Josh had a second illness…so rare that it was unnamed…one that caused aneurisms to develop in his body.

We did hire Josh – and never regretted it. He was deeply respected by PHA’s support group leader network and his fellow staff and fully committed to helping other patients and their families.

One evening, Josh and I were talking about the days before we met and he told me that he had gone to Europe and lived in a monastery for six months, so that he could study their texts in the original language. I realized that, while PH shifted the path of Josh’s life journey, he did not let it change who he was…a bright, intense and committed human being.

Over time, it became clear to Josh and his doctors that the same medicines that were keeping his PH at bay were accelerating the progression of his unnamed disease.

He came to my office to tell me he had made a decision.
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Thank you, John Glenn…

This Saturday morning, I walked the dog, sat down, opened the newspaper and read the headlines and sub heads

CIA: Russia Favored Trump
Secret Assessment of Hacking Effort
Goal went beyond undermining election, agency says

and

Transition Team Targets Energy
Memo seeks identities of many who worked on climate pact, carbon cuts

…and that was just above the fold

I read and thought there’s so much to expand upon here:

a president who didn’t react to the pre-election report because his White House “didn’t want to escalate tensions with Moscow…” and be “accused of trying to boost Clinton’s campaign.”
a Senate Majority Leader who voiced doubts about the veracity of the CIA intelligence…and whose wife has now been announce as President-elect’Trump’s choice for Transportation Secretary.
a 74 question memo from the Trump transition team to the Energy Department to get details on individuals, political appointees, civil service employees and contractors who worked on an international climate agreement or were involved in efforts to cut U.S. carbon emissions.

Then I said, nah.

Either the conversation will move to alt-news efforts to discredit fact-based reporting on these studies…or, like Watergate, so many years ago, these and other stories will fester for a time and then explode. In and case, there will be plenty of time to address them.

More important today is to remember an American hero, John Glenn.

Astronaut Alan Shepard had the first U.S. manned sub-orbital flight into space on May 5, 1961 (the Russian cosmonaut, Yuri Gagarin, flew a month earlier).

On May 21, 1961, President John F. Kennedy spoke to a joint session of the U.S. Congress about a manned flight to the moon by the end of the decade. He followed that with a speech to the American people at Rice University on September 12, 1962, setting that effort as a national goal.

On February 20, 1962, John Glenn took a huge step in that direction for us all with the first U.S. manned orbital flight.

Glenn understood that what he achieved was the product of a national effort. He was the person in the capsule but teams of NASA workers and contractors, national leaders with a vision and U.S. taxpayers made it possible.

His death on December 8, 2016 came 75 years and 1 day after the attack on Pearl Harbor. It was because of that attack that he joined the Air Force, flying 149 missions in World War II and the Korean War.

The space capsule in which he orbited the earth was named Friendship 7, a name hard to imagine us using in today’s environment.

From 1974 to 1999, he served in the U.S. Senate. During that time, in 1988, he joined the Discovery crew to become the oldest person ever to travel in space.

Alan Shepard and John Glenn’s flights took place when I was in elementary school and I remember how they and JFK’s We Choose to go to the Moon speech focused the nation and brought us together. Scientific study became a national priority. He brought out the best in us and we will miss him.

My friend Andy Field, posted a wonderful story about an interview he did with Senator Glenn many years ago. I think it tells a lot about the man and am copying it for you.

THE DAY THE NEWS STOOD STILL

Was lucky to cover and interview John Glenn as a Capital Hill reporter over the years….. great guy and an even better sport. We did a tongue in cheek piece about the goofy Weekly World News tabloid saying he and other Senators were actually aliens. I called his office to see if he would “comment” he played along and even spoke in an alien tongue on camera ..admitting the tabloid had finally exposed his secret..and the Mercury launch was his attempt to return to his home planet. He kept a straight face…i was holding back tears of laughter. What a thrill to have met and spoken with one of my childhood heroes!

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Thank you John Glenn for a great ride and your life’s lessons. Go with humor. Go with grace. Rest in peace.

Fighting to change the Odds: Pat Paton

It was my privilege to work with Pat Paton at the Pulmonary Hypertension Association from 1999 to my retirement in 2016. The values she and her sister Judy and their husbands Jerry and Ed brought to the organization allowed for the creation of better and longer lives.

What I learned from Pat and so many others is that in the face of overwhelming odds, some people give up and become lost; others find a better self and become heroes. Pat is one of the heroes.

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In December 1987 Patricia (Pat) Paton was diagnosed with Primary Pulmonary Hypertension (PH). At that time, less than 200 cases had been recorded in the United States.

PH is a terrible illness. Described as a hardening of the arteries in the lungs, it leads to breathlessness and eventually death through right heart failure.

Diagnosis is difficult. In Pat’s case, after two years of constant fatigue, fainting and doctors who could not tell her what was wrong, her husband, Jerry, packed her in their car and drove 9 hours from their home in Zionsville, Indiana to the Mayo Clinic in Rochester, Minnesota.

Forty-eight hours later, she had her diagnosis. She was told she had primary pulmonary hypertension and was NY Heart Class IV (the worst level). She was given six weeks to six months to live and was sent home.

Pat and Jerry looked at their lives and decided to make the most of their remaining time together. They sold their Indiana home and their business and moved to Florida.

An unexpected thing happened…Pat continued to stay alive.

Pat and her sister Judy began a two year search for another patient…a search to end isolation.

When she finally found two other patients, they met around her kitchen That meeting turned out to be the founding of the Pulmonary Hypertension Association.

Funding their little group out of their own pockets, they launched a newsletter which they gave to their PH doctors, who sent it to other PH doctors. The doctors gave the newsletters to their patients and soon they had been able to find more patients than NIH had located during its five year registry.

The level of patient-to-patient sharing and service inherent in the processes Pat and her sister Judy and others established (and often staffed as a volunteer) in the early years built the organization on bedrock values of loyalty and trust.

With less than $1,000 in their treasury, the little group took on the daunting task of organizing an International Conference. For the first time, they drew together patients, caregivers and medical professionals. Today, that risky Conference has become the largest PH meeting in the world. The little organization they founded is now the second largest rare disease association in the U.S. It has helped seed the founding and development of over 80 sister PH associations globally. PHA has committed over $18.000.000 to research, so far. It publishes the world’s first medical journal dedicated to PH. Recently, it has become the accrediting body for U.S. PH Centers., with a registry poised to improve the quality of medical care in this disease.

Since Pat was diagnosed, the disease has gone from no treatments to 13…more than all but two of the 7,000 identified rare disease.

Pat lives on and her style of leadership is deeply rooted in her attitude of hope. She says that many people on this earth never learn why they are here. That is not the case with her. She knows exactly why she is here and will not hesitate to tell you. Her job is to make the journey a little easier for those who suffer from pulmonary hypertension. She has done and continues to do her job well.